"As far as we know"

Last week, Ashley came home from summer school with significant bruises on both her knees. One knee was swollen and needed ice applied. These bruises joined the other scattered over her body. No note came home from summer school and no phone call was received explaining the bruises.

I sent a note in the next morning asking what had happened. The response came home in the afternoon - "Ashley is doing so well in school. She is a joy to have around, and we are so glad she is a part of the program this year. As far as we know, she didn't fall, so the bruises must come from playing on the playground equipment."

Ashley is supposed to have a full time aide by her side at all times. A seizure can happen at anytime, and her aide is supposed to be there to assist, not to mention the fact that Ashley needs a sign language interpreter at all times. Yet, "as far as they know", Ashley didn't fall???

Monday afternoon this week, Ashley came home from summer school with a bad abrasion on the inside of her right arm just above the crook of her elbow. It was about the size of an egg. No note accompanied her again. I washed it and applied antibiotic ointment. But this time, I did not send a note in the next morning.

The next day, near the end of the summer school day, I receive a phone call from Ashley's teacher telling me that Ashley's aide just reported that Ashley scraped her arm going down the slide on the playground. They took Ashley to the nurse who applied "neosporin and a bandage." I mentioned to the teacher that the injury had occured the day before and her response was, "Oh." No explanation, no apology, nothing.

I'm just hoping Ashley makes it to the end of the summer school session without breaking a bone, getting stiches, or putting out her one good eye...

A TV Solution

Even though Ashley is considered blind, she had a little bit of vision in her right eye. She can focus at about 2 inches. But, even given that, she LOVES to watch television. Her favorite shows are sports, especially basketball, and any show that has babies. She also likes watching the weather during the morning and evening news.

Because of her vision, she must sit directly in front of the television with her good eye just inches away from the screen. We currently have a big old clunker of a tube TV and that has served her well. She can't pull it over by trying to get closer, and even if she is a little rough with it, it's very solid and has taken her abuse for the last 13 years. But we may be coming to the end of that old TV's life.

Now I don't know what to do. Tube TVs aren't sold anymore. Flat screens are all that exist, but flat screens are way more fragile. She could easily pull one over, or damage it. So where do we go from here?

I've thought about trying to find a hutch type cabinet for a flat screen and then somehow rigging up a piece of plexiglass in front of the TV so she can't actually get to the flat screen. But, most hutch type cabinets have the TV up pretty high. Our current TV sits on a stand and Ashley pulls an ottoman up in front which gives her full access to the entire screen. Sitting up higher is not a good option for her since a seizure could have her falling farther to the floor.

So I need advice. What can I do to provide a safe TV watching experience for her?

BTDTGTS

(BTDTGTS = been there, done that, got the t-shirt)

Ashley starts ESY services on Monday. Six weeks of going to school for 1/2 day, 4 days a week. Six weeks of sweltering rides on an un-airconditioned bus. Six weeks that are supposed to keep her from regressing but actually do little more than *teach* her to make tie dyed t-shirts and play in water.

I fought so hard to make sure Ashley had ESY services, and I do think it is a nice change of pace for her from the summer slug time she has had at home for the last three weeks. But I do wish more real academics could be presented to ESY students.

We will also have the same battles we have every summer. Ashley will have to adjust to at least 2 different bus drivers and 2 different bus aides, and there may be more than that. For some unknown reason, ESY services are broken into two sessions - a 4 week session followed by a 2 week session. And there is different bus staff for each. If we're really lucky, she will have a different driver and aide for the morning and the afternoon, upping the number of people to a potential of 8.

The ESY teacher is someone Ashley has never met, and I'm betting has no idea how to teach a child with deafblindness, or deal with Ashley's unique seizure activity, or even how to communicate with Ashley. There will be an aide assigned to Ashley, and it is someone that works at Ashley's regular school - but it is someone who doesn't sign fluently.

There there is the aide she had for several years in middle school who does sign and who will also be working summer school. That might sound like a good thing, but Ashley and that person had a breakup on a professional level at the beginning of last summer, and continued contact (at least on Ashley's part and definitely on my part) will be most unwelcome.

But Ashley can be very 'go with the flow' and will probably be excited about a change in routine. And right after ESY is over, we will be going on a fun family vacation.

So, I will continue to homeschool and keep my fingers crossed that she doesn't catch any illnesses at summer school. I just really wish that ESY could be as it was truly meant to be...

Tears for the Future

Writing about today's subject is very difficult for me. Just thinking about this subject can get me tearing up, but it's something I need to figure out. I would like your ideas and comments.

Often parents of children without disabilities make arrangements with friends or family to care for their children in the event of the parent's untimely death. Call it being a Godparent or a guardian, it's usually not difficult to find someone. But imagine the child has disabilities, severe disabilities, and as the parent you have no family members able to step in. And, it's probably not too difficult to also imagine that there are few if any friends willing to step in and provide the intensive care your child with disabilities will need in the event of your death. What do you do?

And on top of that, imagine how difficult it will be for the child, a child who can't understand that their parent, their whole world, just one day disappeared. What would you do?

I've been to meetings about special needs trusts. Money is one thing, but finding someone willing and able to care for your child with disabilities is another thing. And then imagine that your child is growing up, is over the age of 18 or 21. What then? Your child still needs care every bit as much as they did when they were 5 years old, but they are still unable to direct that care themselves.

There are absolutely no easy answers, but at this point, I would take any answer. Yes, I have an adult son, a son who is just beginning to embark on his life. As much as I know he loves his sister, could I ask him to assume her care for the rest of his life? I know I don't want to, but I haven't found another answer yet.

Advice? Ideas? Tissues....???

A Slot

It's been ten long years.  Years spent missing supports that could have really made a difference.  Not enough assistive technology - not enough environmental modifications - not enough family training - not enough recreation - not enough personal support.  But all that has now changed.

Ashley has finally been granted a 'slot' on our state's Medicaid Developmental Disabilities waiver.

I shouldn't complain too much though because had she been on the waiting list for the Intellectual Disabilities waiver, we might be looking at even another ten years.

I met today with Ashley's service facilitator for the waiver, and we laid out a menu of services that will serve to benefit Ashley immensely.  From increased attendant hours to assistive technology to high intensity day support to prevocational services and family caregiver training and even environmental (home) modifications that would benefit Ashley as well as the opportunity to obtain even more services in the future.  All these things will go a long way towards preparing Ashley for the future, and will also go a long way to removing a small part of the worry I face each and every day.

I know there may be people who say we take advantage of taxpayer money - that we consume more than we should in the way of services.  Well, I'm a taxpayer also, and in addition to caring for my children, I am more than willing to have my tax dollars support your family member with a disability.  Ashley, and the many other people with disabilities in our communities (and note, I said 'in our communities', because that is exactly where they belong), are a vital part of this thing we call the human race.  They have needs, they have wants, and they have rights - JUST LIKE EVERYONE ELSE.  They have skills, they have talents, and they have relationships filled with love and respect - JUST LIKE EVERYONE ELSE.

Neither Ashley nor I sit home, do nothing, and just reap the financial rewards of public assistance.  I work, and I fully expect her to work when she leaves school.  We volunteer, we give back, and we strive to make the world a better place for everyone. 

At this moment in time, Ashley needs more supports than a person without disabilities.  She has a right to those supports, and she deserves them.  She and I both realize that we are blessed that the supports are available, and neither of us will ever take them for granted.

At this moment in time, a small portion of the weight on my shoulders has lifted.  For that, I am eternally grateful.

Prom

It's prom season, and I'm feeling a little sad about that. In just one year, Ashley will be of age and in the correct school grade to attend prom. But unless things change, she probably won't be going.

Ashley's school is very nice. The teachers and staff do their best to make every student, regardless of their level of ability, feel welcome and part of the student body. There is a group called Circle of Friends that brings together regular education students and special education students for many activities and events. I would probably classify this particular school as the most inclusive school in our county, a county which does not yet fully embrace the concept of inclusion. But what about prom?

The high school prom to me is akin to a young lady's coming out party or the Quinceanera of the young Latino girl. It's a time to finally dress up in a fancy dress, put on makeup and have one's hair done. Yes, I know a lot of much younger girls are doing those things long before their late teens today, but for Ashley the prom would be the first for those things.

I also remember it as a time for a first real date (yes, girls do that earlier today also). A date where a young man in a tuxedo picks the girl up in a car, either driven by the date or the date's parents. There were flowers for the wrist, and pictures taken by both parents. It's a time for memories, memories which will stay with the couple (or at least the girl) for a lifetime.

I already know that Ashley will not be asked to the prom. Yes, her teachers and I may be able to 'arrange' something, but that's not what I want for her. I want a real date with a handsome young man who truly wants to accompany Ashley to the dance. Or, I want someone special, someone who will make everyone else sit up and take notice, to agree to go to the dance with Ashley.

Remember when the young military woman asked Justin Timberlake to go to the Marine Corps Ball with her? That's what I want if there is not a student who wants to take Ashley to the prom. I don't know what famous young man I would want, or even how to contact someone, but I really wish I could make it so very special for Ashley.

Does anyone have any suggestions? Ashley likes sports - baseball and basketball - and she likes computers (Mark Zuckerberg??). But in reality, even if I could contact someone, the person would have to have a real heart for people with disabilities. I wouldn't want the famous person to agree just to get more publicity for themselves. Ummm, what are your suggestions? Tim Teebow? Justin Verlander? Maybe the DJ from the Ellen Show? Give me ideas.....

Weaning

Last summer, while Ashley was not in school, I was determined to try and reduce/eliminate some of the medications she took. I just felt like she was reaching a point where the side effects of the medications were worse than the actual condition they were supposed to be treating. That is especially true with seizure meds.

At the beginning of the summer, Ashley was taking Depakene, Keppra, and Trileptal for seizures. She also was taking Clonidine to help her get to sleep at night, Risperdal because many, many years ago before she learned to sign well she would communicate through behavior and Risperdal is a behavior med, and Straterra for ADHD symptoms. She also was taking a low dose birth control pill to regulate her hormones because we would see more seizures with hormone fluctuations.

So I targeted the two meds with the worse side effects – Keppra and Risperdal. Through a very, very slow weaning process that consumed the entire summer, I was able to successfully eliminate both medications without any adverse effects to Ashley. Her seizures did not increase nor change in intensity, and her entire mood improved once the Risperdal was out of her system.

Now I’m wondering if I should try again with some of her other meds this summer.

Ashley still does have seizures, but very, very infrequently. Unless she is sick or getting sick (she does have a lot of ear infections), we see no seizures. In fact, a seizure is sometimes the first indication that she has an ear infection. I’m wondering if I should try to maybe not eliminate the Depakene but reduce the amount she takes.

Depakene can have a negative impact on one’s liver. Ashley started life with a liver deficit because her birth mother was an alcoholic. While on Depakene, Ashley does get frequent blood work done to monitor the status of her liver. I would like to think that I could lessen the impact to her liver if the dose of Depakene she took was smaller.

She has also been on Clonidine for a long, long time. While I haven’t noticed any side effects to that medication, I would still like to reduce the amount of meds she is taking, especially if she doesn’t really need it any longer. Sleep has never been one of Ashley’s well-honed skills, but I have noticed in the last couple of years that she is adjusting to the routine of sleep. Now instead of getting up 4-5 times a night, there are only 2-3 nights a week that she gets up at all, and then it is usually just one time. So maybe her body has finally accepted the wake/sleep cycle.

I think I may start with the Depakene. Instead of 10ml three times a day, I’ll go very slowly and try to get her to 5 ml three times a day by the end of the summer. And instead of 2 Clonidine at bedtime, I’ll try reducing to one and then if that goes well, to none by the end of the summer.

I always want her to have any medication that she truly needs, and figuring out exactly what she needs can sometimes be difficult. But building upon our success last summer, I hope that if things go well this summer, her liver will be in better shape and maybe the veil or fog of consciousness will dissipate a little more.

Special Exposure Wednesday

We've had a pretty rainy Spring so far. My garden is loving it - Ashley, not so much...

My Cat in the Closet

**originally posted January, 2009**

I wrote last week about embracing HOPE as my theme for 2009. One of the commentors on that post and one of my favorite bloggers, Michelle Morgan-Coole, at the blog, Free Falling, shared some very honest thoughts about what hope means to her.

She said ,” Sound strange, I know, but I have come to the conclusion that hope is bad for the soul. Just my own personal experience, born from living with the seizure monsters for the past 14 years, when everytime you dare begin to hope they might actually be gone (surely close to two years without or even six months must mean something?) they return with a vengance.”

For me, the opposite is true – hope is the only thing that keeps my soul alive. It would be so easy for me to resign myself to Ashley’s special medical needs. But had I done that when I first adopted her at age 2, her doctor’s predictions probably would have come true.

She wouldn’t be walking and running. She wouldn’t be communicating. She wouldn’t be eating. She would probably not be alive.

Hope was the force that propelled me through endless hours of therapy, doctor visits and hospital stays. Hope became my belief that Ashley was very capable of becoming more than anyone else ever believed she could become. Hope is what keeps me fighting school districts and insurance companies. Hope is the battle won for ESY (Extended School Year) services. Hope is the battle won for an accessible bathroom built at insurance expense.

Hope is what allows me to dream of her future, a future filled with love, marriage, a job, and maybe even children. Hope is the comfort in my heart that says she will be ok even after I am gone.

Continuing to nurture that hope is not easy. Like Michelle said, when the seizures keep coming, even after an extended seizure-free time – when the medical conditions don’t worsen but also don’t get better – when almost everyone we meet treats Ashley as less a being than she is – finding and holding on to hope is a struggle.

But like my cat who continues to run into the same closet day after day even though she keeps getting locked in accidentally, I have to keep believing and searching.

Hope is my cat in the closet…

Dutch Door

Ashley is a child that likes to explore. She is also very strong willed. If she doesn't want to do something, I am hard pressed to convince her otherwise. And staying in bed and in her room at night is just one example.

Left to her own devices, she would get up in the middle of the night, go help herself to something from the fridge, and then proceed to the family room to engage in some noisy pursuits. Since she is blind and deaf, I worry about her safety during those times.

When she was much younger, she had an enclosed bed. But once she learned to climb over the top and slide to the floor, I moved to using a baby gate at her bedroom door. That lasted maybe a year or two, and then she figured out how to unlock and escape. My latest attempt at keeping her safe in the middle of the night is a Dutch door.

Two years ago, I had a Dutch door installed in place of her regular bedroom door. When it is her bedtime, I keep the top part of the door open and close the bottom part. Doing it like that means I can still hear her if she needs me, but it also helps to keep her from wandering. I did have the lock placed on the outside of the door thinking she wouldn't figure that out and be able to unlock it herself. It took her all of 45 minutes to figure that out. So now, I have a slide lock placed at the bottom of the outside of the door. That solution has worked for two years now, but I never know when the little smarty pants will figure out how to open that.

But for now, I can sleep easily knowing she is safe in her room in the middle of the night!

I have heard that any door can be adapted to be a Dutch door, but because Ashley is such a strong little cookie, I opted for a solid wooden door. It wasn't cheap, but for two+ years of restful sleep, it was well worth the money!

Just another of those innovations we parents of children with special needs have to devise!!

Sad

Today I am sad about something. It may seem like a small thing, but still today it bothered me.

Ashley will never be able to see a real rainbow.




Rainbows have always thrilled me. It's like a special surprise at the end of a rain storm. When I see one, I feel lucky somehow, like someone has given me an unexpected gift.

I know she can see small pictures of a rainbow but never the real thing - never the surprise, the joy, the unexpected smile that appears along with the lovely display of colors.

It makes me sad....

Favorite Things!

Ashley celebrated her birthday Saturday with some of her favorite things...

Shopping for plants for our garden...



Counting the big round lights at the store...



Eating Elmo cupcakes...



And smelling the beautiful flowers her brother, Chip, bought her...



And of course, a lot of shopping for new clothes!! All in all, a very good 17th birthday celebration!

She and I

Seventeen years ago today a baby was born weighing just under two pounds. She entered the world just as she has lived her life – kicking, screaming, fighting, and determined to have her way. She endured liver biopsies, brain surgeries, eye and ear surgeries, monitors and enough medicines to fill several gallon sized containers. Then at age two, she found her way to me, the mother she was always meant to have.

We’ve struggled, she and I…so many medical issues about which I knew nothing…the closest brush with death that I hope never to experience again…the school battles and lawsuits…the insurance battles and lawsuits…and the general growing up in a crazy world issues (OMG, the teenage years….). But through it all our hearts have grown virtual connective tissue. We are of one heart now, she and I, one heart that must have its two parts intact to survive.

Her smiles as she opens her eyes and turns her face to me each morning turn the world into Technicolor. The touch of her hand on my face when she wants to make sure I understand what she is trying to tell me imparts a peaceful understanding and acceptance that everything is right and good. And when I look into her eyes, I see the wisdom, the truth, and the love that God has imprinted on her soul.

She is my beautiful daughter, one of the strongest loves of my life, the child I dreamed of when I was a child. I cannot imagine not having her in my life or my not being in hers. God willing, we will have many more years together, and when God decides that it is my time to leave this world, I sincerely hope she is just one breath away from joining me.

Happy birthday, my dear Ashley. Love, mama.

Purple Day

Yesterday was Purple Day. Purple is perhaps the color I despise most. I don't know why, but whenever I have tried to wear something purple or to use purple in my home decorating, I feel like I have a constant creepy crawly itch all over, sort of like just realizing you have sat next to a tree full of chiggers.

But still I celebrated Purple Day yesterday.

Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th annually, people in countries around the world are invited to wear purple and host events in support of epilepsy awareness. This year, people in dozens of countries on all continents INCLUDING Antarctica will be participating in Purple Day!

So while I couldn't bring myself to actually wear purple (remember those chiggers), I did celebrate by holding my sweet Ashley just a little tighter and a little longer!

Ashley has had seizures all her life. When I first adopted her, she was having 2-3 a day. When she was just three years old, she had a status seizure and the only thing that kept her alive was life support for three weeks. Her doctors and I have been through many medications trying to get her seizures under control, but have never been completely successful. But things have definitely gotten better.

About the time Ashley hit puberty, her seizures changed a bit. Instead of grand mal type seizures, she changed to complex partial seizures. But the number of seizures went up to 6-8 a day. That was where she stayed for several years as we experimented with different medications, all of which had a lot of undesirable side effects. Also about this time, we discovered that she has three brain tumors. The doctors feel they are benign tumors and that they are not the source of her seizures. So, I have made the decision not to put her through brain surgery at this time.

Then as Ashley emerged from the puberty storm, her seizures changed yet again. While they are still complex partial seizures, they are shorter in duration and fewer and farther between. Now she may only have 2-3 a week. And, she can now tell when one is about to happen and can get herself into a safe position to avoid injury.

So all in all, things are much better. I hope that one day she will have no seizures, but at least things are manageable right now. Seizures will mean she would never be able to get a driver's license - well that and the fact that she is blind - but there is little else that she can't do.

So in honor of Purple Day, I resisted the urge to scratch and donned something purple. Purple Day or not Purple Day, she is one of the most important people in my life and I would do anything for her - even wear purple!

Apps for Ashley

My gotta-have-the-latest-gadget son, Chip, got the new iPad 3 last week. While I am very happy for him, I am also thrilled (!) because it means Ashley gets his old one!! Yes, it is the first generation iPad, and yes it is a little slow and crashes sometimes, but still it is very exciting for her.

Ashley has been using an iPad at school for a year now, and loves it! The school staff was amazed at how quickly she picked up the techniques (finger swipe and such) as well as at the increased pace of her learning. Of course, I have been telling them since she was in 3rd grade that she needed a computer-based curriculum...

I've asked her teacher to let me know what apps Ashley uses at school so we can get the same ones for home. But, I am also interested in apps you may have found to be especially good for a child with special needs. Keep in mind that Ashley is severely visually impaired (blind in one eye, 20/2000 in the other) and severely hearing impaired (profound loss in one ear, severe in the other). She doesn't need any communication type apps, proloquo for example, because she indicated years ago that all she wants and needs for that are her hands for signing. She loves Tigger, SpongeBob and Elmo, and loves looking at people's (mostly children's) faces. She likes numbers and letters, and she likes movement, i.e. dancing letters and numbers. She's not a huge fan of coloring apps because she would rather create three dimensional artwork.

So, given all that, what are you recommendations for some iPad apps??!!

TGIF!

Someone in this family is NOT a morning person! Happy Friday, everyone!

A Hot Cup of Coffee

I so wish that all of Ashley's school years could have been as positive as high school has been for her. I credit Ashley's teacher, Mrs. Marsh, for all the good things that have happened and continue to happen for Ash in school. Here is a link to just one example of those good things (Ashley can be seen close to the end of the video clip):

The Tucker High School Coffee Shop

Thank you, Mrs. Marsh, for caring and for making a difference in Ashley's life and the life of all your other students!

Holiday Outings

Ashley loves the carwash. Don't tell me I don't know how to show my children a good time!



TODAY'S CLUE: Two of you have guessed correctly! All will be revealed with pictures tomorrow!

Orange? Blue? Hot Pink?

Are there really other people in the world besides Ashley who would want an orange Christmas tree????



TODAY'S CLUE: One last clue and then all will be revealed on Saturday!

I think I've bought way too many toys!

On To The Moon!

Tuesday we visited our local science museum. We have a family membership primarily because it gets up free admission to our museum but also to hundreds of others across the country. We used it a lot last summer around our state. It really is the best $100 I have ever spent!

Here is my astronaut in training, Miss Ashley! Look closely and you can see her head in the helmet...



TODAY'S CLUE: I had no idea how much daycare cost until I visited one today for a tour!

(The guesses that have come in are good, but not quite correct yet...keep trying!)